Oncofertility Decision Tools
In the last decade, a great deal of progress has been made in terms of improving clinician-patient education, communication, and decision support with regard to oncofertility and fertility preservation. The Oncofertility Decision Tool Web Portal hosts decision tools designed to help health care providers navigate fertility preservation options discussions with their patients.
- Decision Tools
- Oncofertility Decision-Making Publications
- Clinical Guidelines, Recommendations, Policy Statements & Opinions
Decision Tools
Decision Tools are designed to enable oncofertility stakeholders to take action. They provide information to help health care providers guide patients through their fertility preservation options and help them make the best decision based on their cancer treatment, lifestyle, values, and future fertility goals.
| Decision Tool | Targeted Patient Population | How Can Health Care Providers Use This Tool? |
|---|---|---|
| Adolescent Fertility Values Clarification Tool (AFVCT) | Adolescent Oncology Patients (Aged 12-18 Years) |
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| Female Oncofertility Decision Tree | Post-Pubertal Female Oncology Patients |
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| Male Oncofertility Decision Tree | Post-Pubertal Male Oncology Patients |
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| Future Decisions Tool | Post-Pubertal Female Oncology Patients | A decision tree designed to guide physicians through conversations with female patients about fertility preservation future decisions and long-term effects, including:
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| Treatment Guidelines for fertility preservation in young women at high risk for breast or ovarian cancer | Young Women with Hereditary Cancer Predisposition Syndromes | A decision tree specifically designed to help health care providers discuss fertility preservation options with young women at high-risk for developing breast and/or ovarian cancer due to hereditary cancer predispostion syndomes, like Hereditary Breast and Ovarian Cancer (HBOC) syndrome caused by deleterious mutations in BRCA1/2. |
| Fertility Preservation Assessment and Discussion Algorithm for Patients with Cancer | Post-Pubertal Oncology Patients |
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| Fertility Preservation Patient Navigation | Pre- and Post-Pubertal Oncology Patients |
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| FertiQoL | Patients with infertility | FertiQoL is an internationally validated self-report questionnaire physicians can administer to patients struggling with infertility (independent of infertility treatment status) in order to assess the quality of life of an individual with infertility. The tool has been designed to facilitate improvement in the quality of life of those with infertility. The questionnaire takes approximately 10-15 minutes to complete and covers four domains (overall, personal, interpersonal, and healthcare) and nine dimensions (emotional, psychological, physical, values, partner relationship, social network, occupational/work, medical, and psychoeducational).
FertiQoL is available in: Dutch, English, Finnish, French, German, Italian, Portuguese, Russian, Spanish, and Swedish. |
| Learning About Cancer and Fertility: A Guide for Parents of Young Girls | Adolescent females | Learning about Cancer and Fertility: A Guide for Parents of Young Girls is a decision aid designed for parents of young girls diagnosed with cancer. Developers created this paper-based tool that focuses on the child’s survival rather than future fertility, however it also outlines available fertility preservation options. The focus of the tool is not just for making fertility preservation decisions but also serves as a guide to give parents information that will help them talk with their child’s healthcare team now and in the future as she grows. |
Oncofertility Decision-Making Publications
Many publications are available to providers interested in learning more about patient and provider oncofertility conversation starters, techniques, interventions, and assessments.
| Publication | Patient Population | How Can Health Care Providers Use this Publication? |
|---|---|---|
| How Do Cancer Patients Learn About Fertility Preservation? Five Trajectories of Experience
Snyder KA & W Pearse Oncofertility Communication (2014) |
Female Post-Pubertal Oncology Patinets | This chapter from Oncofertility Communication (2014) describes a study of 67 women with recent breast cancer diagnoses assessing how they learn about fertility preservation. The analysis focused on:
Five trajectories emerged as to how patients learn about fertility preservation and the inhibiting and facilitating factors were also assessed. Read more to learn how you can empower your patients by providing fertility preservation information. |
| Communicating Across Diverse and Differently Literate Audiences
Mersereau JE & AR Brandon Oncofertility Communication (2014) |
Pre- and Post-Pubertal Oncology Patients | This chapter from Oncofertility Communication (2014) describes the unique communication challenges with fertility preservation and suggests:
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| Patient and Family Tools to Aid in Education and Decision-Making About Oncofertility
Quinn GP, Vadaparampil ST, Sehovic I, & ML Clayman Oncofertility Communication (2014) |
Adolescent and Young Adult Oncology Patients | This chapter from Oncofertility Communication (2014) assesses several oncofertility-related educational materials and decision aids. It also contains:
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| Cancer-Related Infertility and Young Women: Strategies for Discussing Fertility Preservation
Snyder KA & A Tate Oncofertility Communication (2014) |
Female Post-Pubertal Oncology Patients | In this chapter from Oncofertility Communication (2014), read about a series of retrospective focus groups conducted with adult women who were diagnosed with various forms of cancer between ages 14 and 20. Highlights include:
The chapter also provides health care providers with strategies for fertility preservation counseling. |
| Fertility Communication and High-Risk Patients
Llarena NC & JS Jeruss Oncofertility Communication (2014) |
Women with hereditary cancer predisposition syndromes | This chapter from Oncofertility Communication (2014) is specifically written to help health care providers discuss fertility preservation options with women who have hereditary cancer predisposition syndromes, or “previvors”, who are 1) at increased risk of developing premenopausal breast or ovarian cancer and 2) may require a risk-reducing intervention prior to menopause that poses a threat to future fertility. The chapter addresses:
The chapter also includes two case examples providers can read to familiarize themselves with the unique situation of high-risk women. |
| Incorporating Partners and Spouses in Oncofertility Communication
Johnson Shen M & H Badr Oncofertility Communication (2014) |
Oncology patients with partners | This chapter from Oncofertility Communication (2014) addresses the issue of communication between patients and their partners. Learn about the impact of fertility preservation and infertility on couples and the communication needs of adult cancer patients and their partners. Encourage your patients and their partners to consider the following issues when approaching oncofertility communication:
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| Genetic Counselors: Bridging the Oncofertility Information Gap
Goetsch A, Volk A, & TK Woodruff Oncofertility Communication (2014) |
Oncology patients with or at risk for hereditary cancer predisposition syndromes | This chapter from Oncofertility Communication (2014) suggests ways genetic counselors can aid oncologists and reproductive endocrinologists by addressing fertility preservation concerns with patients with family histories of cancer and/or hereditary cancer predisposition syndromes. |
| Communicating Oncofertility to Children: A Developmental Perspective for Teaching Health Messages
Wartella E, Lauricella AR, & LB Hurwitz Oncofertility Communication (2014) |
Pediatric Oncology Patients | This chapter from Oncofertility Communication (2014) contains:
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| Disparities in Adolescent Patient-Provider Communication Regarding Fertility Preservation Care
Fuchs AB & RE Brannigan Oncofertility Communication (2014) |
Adolescent Oncology Patients | This chapter from Oncofertility Communication (2014) addresses the barriers to discussing fertility preservation with adolescents and the disparities that currently exist in communicating the topic of fertility preservation to the adolescent patient population. |
| Fertility Communication to Cancer Patients: A Hematologist-Oncologist’s Perspective
S Barnato Giordano Oncofertility Communication (2014) |
Pre- and Post- Pubertal Oncology Patients | This chapter from Oncofertility Communication (2014) addresses the many barriers physicians face providing patients with fertility preservation options. |
| An Interprofessional Approach to Shared Decision Making: What it Means and Where Next
Legare F & D Stacey Oncofertility Communication (2014) |
Oncology Patients | This chapter from Oncofertility Communication (2014) discusses effective ways health care providers can involve patients in shared decision making, including use of:
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| Oncology Communication Tools for Professionals and the Public
Foster LaBrecque S, Wallach H, & KE Waimey Oncofertility Communication (2014) |
Oncology patients | Learn about the many available ways health care providers and the public can learn about oncofertility in this chapter from Oncofertility Communication (2014). The following communication tools are discussed:
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| Potential Future Decisions Regarding Fertility Preservation
Quinn GP & ST Vadaparampil Am J Obstet Gynecol. 2013 Aug;209(2):98-102. |
Post-Pubertal Oncology Patients | A decision tree designed to guide physicians through conversations with patients about fertility preservation future decisions and long-term effects, including:
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| Using a patient-centered approach to develop a fertility preservation brochure for pediatric oncology patients: a pilot study
Murhpy D, Sawczyn KK, & GP Quinn J Pediatr Adolesc Gynecol. 2012 Apr; 25(2):114-21 |
Pediatric Oncology Patients | This study involved the creation of two versions of gender concordant brochures on fertility preservation desgined for pediatric oncology patients and their parents. Feedback was obtained and incorporated into the final version of the brochures.
Health care providers can use the brochures to facilitate fertility preservation discussions with male and female pediatric patients. View the Female Brochure View the Male Brochure |
| The Birds and the Bees and the Bank: Talking with Families About Future Fertility Amidst a Cancer Diagnosis
Quinn GP, Knapp CA, & D Murphy Oncofertility Medical Practice (2012) Clinical Issues and Implementation |
Adolescent Oncology Patients and their Families | Face-to-face communication between health care providers and patients is the most effective way to convey complex information regarding cancer treatment and fertility. This Chapter from Oncofertility Medical Practice Clinical Issues and Implementation (2012) describes how clinicians can more effectively conduct discussions about fertility with patients who have received a recent cancer diagnosis. Contains:
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| Communication Between Oncofertility Providers and Patients
Jennifer Mersereau Oncofertility Medical Practice (2012) Clinical Issues and Implementation |
Post-Pubertal Oncology Patients | This chapter from Oncofertility Medical Practice Clinical Issues and Implementation (2012) suggests ways to address the existing oncofertility information gap through improved communication and facilitation of better decision-making. Helpful tools include:
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| Patient Navigation and Coordination of Care for the Oncofertility Patient: A Practical Guide
Smith K, Efymow B, & C Gracia Oncofertility Medical Practice (2012) Clinical Issues and Implementation |
Pre- and Post- Pubertal Oncology Patients | This chapter from Oncofertility Medical Practice Clinical Issues and Implementation (2012) describes ways to improve the fertility preservation consult using teams of providers that are unifed by allied health professionals, with emphasis on the role of patient navigators and nursing in the care of the oncofertility patient. Read about:
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| Nonmalignant Diseases and Treatments Associated with Primary Ovarian Failure: An Expanded Role for Fertility Preservation
Hirshfeld-Cytron J, Gracia C, and TK Woodruff Journal of Women’s Health (2011) 20 (10): 1467-1477 |
Women with non-malignant conditions | This article reviews several fertility-threatening conditions, treatments, and current established and experimental fertility preservation options. Some of the nonmalignant diseases and treatments that can impact reproductive function include:
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| Using decision trees to enhance interdisciplinary team work: the case of oncofertility
Gardino SL, Jeruss JS, & TK Woodruff J Assist Reprod Genet (2010) 27:227–231 |
Post-Pubertal Oncology Patients |
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| Oncofertility and Informed Consent: Addressing Beliefs, Values, and Future Decision Making
Felicia Cohn Oncofertility (2010) Ethical, Legal, Social, and Medical Perspectives |
Pre- and Post-Pubertal Oncology Patients | This chapter from Oncofertility Ethical, Legal, Social, and Medical Perspectives (2010) focuses on the ability to account for the immediate and long-term implications of oncofertilty decisions, including:
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| Bioethics and Oncofertility: Arguements and Insights from Religious Traditions
Zoloth L, & AA Henning Oncofertility (2010) Ethical, Legal, Social, and Medical Perspectives |
Pre- and Post-Pubertal Oncology Patients | Patients may consult, invoke, or defer to religious beliefs, sources, or leaders when making decisions about their own medical treatment or treatment for a surrogate (e.g., a chld or incompetent parent or partner), including decisions about whether to seek access to oncofertility reserach protocols or technologies and determining which types of research protocols or technologies they wish to pursue. Therefore, understanding a patient’s religious commitments is one critical part in oncofertility discussions so that physicians and family members may better communicate with a patient who draws upon religion to cope with an illness or make medical care decisions. This chapter briefly explores the following religous traditions and their anticipated or potential contributions to the ethical discourse surrounding oncofertility:
As a health care provider, you can read about preliminary responses that may guide each religion’s tranditional stances toward reproductive technologies and procreation in this chapter from Oncofertility Ethical, Legal, Social, and Medical Perspectives (2010). Read more about Oncofertility in Muslim Communities and Muslim Women and Oncofertility as Devotion Read more about Oncofertility and Catholic Tradition Read more about Jewish Perspectives on Oncofertility |
| Shared Decision Making: Fertility and Pediatric Cancers
Clayman ML, Galvin KM, & P Arntson Oncofertility (2007) Fertility Preservation for Cancer Survivors |
Pediatric oncology patients | This chapter from Oncofertility Fertility Preservation for Cancer Surivors (2007) discusses how the key constructs from family systems theory and the shared decision-making model are used to understand how families whose children are newly diagnosed with cancer can make informed choices about the future fertility of their children. Includes:
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| The Psychosocial Context of Cancer-Related Infertility
Loscalzo MJ & KL Clark Oncofertility (2007) Fertility Preservation for Cancer Survivors |
Post-Pubertal Oncology Patients | This chapter from Oncofertility Fertility Preservation for Cancer Surivors (2007) discusses the psychosocial implications of fertility loss due to cancer treatment. Includes:
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| Validation of a New Scale for Measuring Concerns of Women Undergoing Assisted Reproductive Technologies (CART)
Klonoff-Cohen H, Natarajan L, & E Klonoff J Health Psychol (2007) 12:352 |
Patients with Infertility | Klonoff-Cohen et al. (2007) discuss the psychological and physical stress of undergoing assisted reproductive technologies (ART) and the developemnt of the Concerns of Women Undergoing Assisted Reproductive Technologies (CART) instrument.
The CART captures unique concerns experienced by women undergoing IVF or GIFT (gamete intrafallopian transfer), prior to, during, and after treatment, which are not evaluated by other existing instruments. Validity and reliability are adequate, and the instrument does not appear to be related to demographic factors. |
Clinical Guidelines, Recommendations, Policy Statements & Opinions
As a health care provider who treats patients interested in fertility preservation options, it is important to stay up to date regarding the published clinical guidelines, recommendations, and opinions of professional organizations involved with the care and treatment of fertility preservation patients.
| Resource | Professional Society or Organization | Category | Publication Year | How Can Health Care Providers Use This Resource? |
|---|---|---|---|---|
| Evidence-Based Recommendations for Fertility Preservation Options for Inclusion in Treatment Protocols for Pediatric and Adolescent Patients Diagnosed with Cancer | Association of Pediatric Hematology/Oncology Nurses (APHON) | Evidence-Based Recommendation | 2014 |
APHON published a comprehensive synthesis of current evidence and recommendations regarding fertility preservation options for children, adolescents, and young adults undergoing cancer treatment. Health care providers may find this resource beneficial because it provides medical information, evidence tables, psychological considerations, and summary recommendations regarding fertility preservation options for both pre- and post-pubertal male and female patients, including:
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| Female age-related fertility decline | American Society for Reproductive Medicine (ASRM) | Practice Committee Opinion | 2014 |
Education and enhanced awareness of the effect of age on fertility are essential in counseling the patient who desires pregnancy. Given the anticipated age-related decline in fertility, the increased incidence of disorders that impair fertility, and the higher risk of pregnancy loss, women older than 35 years should receive an expedited evaluation and undergo treatment after 6 months of failed attempts to conceive or earlier, if clinically indicated. In women older than 40 years, more immediate evaluation and treatment are warranted. This practice committee opinion can assist with fertility preservation discussions by providing you with age-related fertility rates. |
| Ovarian tissue cryopreservation: a committee opinion | American Society for Reproductive Medicine (ASRM) | Practice Committee Opinion | 2014 |
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| Adolescent and Young Adult (AYA) Oncology | National Comprehensive Cancer Network (NCCN) | Clinical Practice Guidelines in Oncology | 2014 |
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| Survivorship | National Comprehensive Cancer Network (NCCN) | Clinical Practice Guidelines in Oncology | 2014 |
These guidelines focus on the vast and persistent impact both the diagnosis and treatment of cancer have on the adult survivor. This includes the potential impact on health, physical and mental states, health behaviors, professional and personal identity, sexuality, and financial standing. |
| Fertility Preservation for Patients With Cancer | American Society of Clinical Oncology (ASCO) | Clinical Practice Guideline Update | 2013 |
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| Fertility preservation and reproduction in patients facing gonadotoxic therapies: a committee opinon | American Society for Reproductive Medicine (ASRM) | Ethics Committee Opinion | 2013 |
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| Mature oocyte cryopreservation: a guideline | American Society for Reproductive Medicine (ASRM) & Society for Assisted Reproductive Technology (SART) | Practice Committee Opinion | 2013 |
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| Fertility Preservation in Cancer Patients | American Society of Clinical Oncology (ASCO) | Clinical Practice Guideline | 2006 |
Guidance to practicing oncologists about available fertility preservation methods and related issues in people treated for cancer, including:
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| Ovarian Tissue and Oocyte Cryopreservation | American Society for Reproductive Medicine (ASRM) & Society for Assisted Reproductive Technology (SART) | Committee Opinion | 2006 |
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| Long Term Follow-Up for Survivors of Childhood, Adolescent, and Young Adult Cancer | Children’s Oncology Group | Clinical Practice Guideline | 2006 |
Risk-based, exposure-related clinical practice guidelines which provide recommendations for screening and management of late effects in survivors of pediatric, adolescent, or young adult malignancies. Clinicians can look up the late effects associated with the patient’s specific treatment or therapeutic agent(s). The guidelines are not specific to risks of infertility, however they do provide limited fertility information. |
| Fertility Preservation and reproduction in cancer patients | American Society for Reproductive Medicine (ASRM) | Ethics Committee Report | 2005 |
The ASRM Ethics Committee Report includes:
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| A strategy for fertility services for survivors of childhood cancer | British Fertility Society | Multidisciplinary Working Group Recommendation | 2003 |
The British Fertility Society recommendations are organized and specific for oncology units, assisted conception units, and the government. Recommendations regarding fertility services for cancer survivors, include:
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Preservation of Fertility in Pediatric and Adolescent Patients with Cancer |
American Academy of Pediatrics | Policy Statement | 2008 | |
| American Society of Reproductive Medicine | Policy Statement | 2013 | ||
| Fertility Preservation in Patients with Cancer: ASCO Clinical Practice Guideline Update | American Society of Clinical Oncology | Clinical Practice Guideline Update | 2018 |
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